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I’m Sorry I Couldn’t Save You

I’m Sorry I Couldn’t Save You

 

I had a dream about you last night.

I dreamt of your face.

Gazing up at me.

Sweet smile and beautiful eyes.

Smiling up at me.

And I couldn’t save you.

 

I dreamed I tried so hard.

I asked you to come with me.

But you wouldn’t come.

Trusting face and open heart.

I couldn’t persuade you.

And I couldn’t save you.

 

I knew it would not be safe for you.

I knew you would succumb.

So loving but so tortured.

Heart so flayed and clean.

Torn by your youth and truth.

You thought you’d disappointed.

And I couldn’t save you.

 

I pulled you up to move you with me.

But you stayed and laughed.

Preferring to disappear inside.

I loved you and couldn’t stop you.

You chose the needle oblivion.

My friend who couldn’t love himself.

And I couldn’t save you.

 

I’m sorry I couldn’t save you.

I dreamed of you and tried.

But you could not step outside your pain.

I dreamed of you and cried.

Your pain overruled everyone.

Your pain hid love from your soul.

And I couldn’t save you.

 

© Tina Price-Johnson

28.01.2016

Written in memory of a friend who passed long ago, and whom I think about often.  Addiction is a symptom, the cause of which is varied, but as long as causes are not addressed, the disease will prosper. In memory of NP.

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Collaborating Creatively: Rushey Green Timebank

I have told both my beloved readers before about the joy of being a member of Rushey Green Timebank, and I can scarcely believe I have been an active member for 8 years now!  I offer my Wills and Probate expertise at our Bring & Fix’s and have been on the receiving end of fantastic gardening assistance and mending and adjustment of clothing from other members.  We swap hours of help with each other, it’s fabulous!

Well, it’s also about building community and a huge part of that is getting together with people of similar interests.  For me, that has meant the creative group.  We have held a few poetry/prose/music nights with choirs, readings, and artwork displayed for all members to enjoy and hopefully be inspired by.

Last night was a creative collaboration evening, sprung from the febrile fertile minds of those of us who attend the creative group (mostly writing but it is hoped musical RGTB members may arrange their own group at some point).  Exercises were chosen by our member Pete, who organised the gathering, but we can all organise get-togethers for interested parties.  The Timebank is there to support.

Timebank event 10.08.2019My goodness, it was enthusing and it was fun!  Five of us attended and exercises were given to stimulate our minds into working together to create a unique piece.  I also learnt what an Acrostic Poem is (one which forms a word with the starting letter of each line, going downwards).  I turned up at the meeting suffering badly with chronic fatigue, and left just as tired but with a mind filled with inspiration.  I’m ready for our performance event on 10th August 2019 – come along if you can.

If there is a Timebank near you (have a google) then I strongly advise you to join.  It builds community like nothing else I’ve come across.  I have been involved since April 2011 and have yet to find a downside!

For the interested, here is what was created last night, in just 90 minutes:

A STORY FROM GIVEN WORDS – Axe, hammer, a length of rope

By Hanneke, Michael & Tina

The shopkeeper looked up at the sound of whistling to see the customer walking towards them, with an exaggerated air of nonchalance.  They started to browse the shelves and the shopkeeper watched carefully.  The customer pulled out different types of rope, pulling and testing the tension, finally selecting a robust one.

“I’ll have 6 metres of this,” the customer said.

The customer then ran their fingers down the edge of various axes, selecting a large double-headed one.  Finally the customer hefted several types of hammer, pounding them against the palm of their hand until they found one sufficient to their purpose.   The customer took their items to the counter.

“Got everything you need?” the shopkeeper asked.

The customer smiled. “I think so.”

“Big project planned?”

The customer smiled again, knowing there was no reason to say what they might be intending to do with their items.

“How much weight do you think this rope can take?” the customer asked.

“Depends what you want to do with it,” the shopkeeper answered.

“I’m about 12 stone.  Do you think it would take my weight?”

“Ummm… Should do,” the shopkeeper answered.

“So it would take your weight then?”

“Yes, should do.”

“And the axe, sharp enough to cut through anything?”

“…yes” the shopkeeper answered nervously.

“This hammer seems pretty lethal too, right?” the customer laughed to themselves.

“Err… that’ll be £50 all in”.

“Here you go, cheers mate.”  The customer went to pull out a card, shook their head, then pulled out some notes instead.

The shopkeeper put the items in a bag, hoping their hands didn’t shake too much with the nerves that ran through their body.  They passed the bag over, saying “hope the project goes well.”

The customer walked out the door, pausing to turn around and say “I hope my kids like their new treehouse, the swing should be a real laugh!”

 

By Julie & Pete

He walked into the shop carefully looking out for security cameras.  He pretended to browse but he knew the items he wanted to buy.  Carefully chosen, he paid using cash, as he would not be identified.

He felt euphoric, he had been planning this for months and now it was about to happen.

He left the store, carrying his bag of items.  His car was parked around the corner, again avoiding CCTV cameras.  He stopped briefly at the boot, contemplating whether to open it but decided the risk of exposing the cargo within was too great.

A couple of hours later he was at his destination, a wood with a broken down shed amongst the trees.  He pulled the body out and hung it from the rafters.  Then he chopped the wood up and hammered the door shut.

His wife had told him to get rid of the blow-up doll, but he knew he would come back later for his pleasure.  But then he realized; he’d forgotten to buy a pump and the shop was now closed!

 

ACROSTIC POEM – from the word “together”

By Julie & Pete

Time passes by so swiftly

One hour seems like a second

Gone like an old memory

Each moment spent in the company of others

Ties the bonds between them

Heavy is the heart that stands alone

Ever to try and clutch at the invisible threads

Running through the fabric of life

 

By Hanneke, Michael & Tina

To find another in a lonely hour

Or to lose oneself in the dark of the winter soul

Gold for Arsenal!

Everybody cheers

Team wins and we shout our joy to deafen ourselves

Help is on the way

Enough to keep us going

Resting quietly alone until we join up again for the next fixture

 

PICK A WORD FROM A HAT, ONE FOR EACH GROUP MEMBER

By Hanneke, Pete & Tina

Words picked: Alphabet, Petrichor, Saxophone

Open plains; a house is on the horizon with a porch.  It has not rained for weeks, in the middle of summer.

The people were desperate to quench their thirst, to water their crops, and they called on the music man to save them.

The music man had spent several years learning to play Josie, his beloved saxophone.

He was known for calling in the crowds with Josie, maybe now she could call in the rain?

He stilled himself, centring his focus until all that existed was Josie and the sounds they could, they would, create together, and he kissed the mouthpiece with reverence, then blew.

Josie sounded beautiful as always and the music man started running through the alphabet of notes as he fingered the keys.

On a long G major clouds broke in the sky and it began to rain heavily; the music man and Josie left the porch and walked into the open as the earth shared its revelation.

Thick drops fell to the ground and the dust rose up to meet it, thudding life back into the earth and renewing all who bathed in nature’s shower.

The music man revelled in the rain but realised Josie would not like it.  He stopped playing and placed Josie back in her case.  As soon as he did, the rain stopped and left petrichor in the air.

RGTB logo

Premature Obituary

26 December 2101

Ms Tina Price-Johnson passed away at the age of 129, an age she never expected to see, managing as she did to span the change of two centuries and lucky enough to remember the turn of both.  She would have been thrilled to make it to one last Christmas simply because she was a person who enjoyed giving gifts and making people happy, if she could.  Plus, she was excited to see what people would give the woman who lived way too long not to have all she needed, if not all she wanted.

I love that cloak so much...

LSH with Tina

Tina leaves behind a menagerie of cats (56 at last count) and a long-suffering husband (LSH) who according to his promises will shortly follow her into the grave having fallen on his sword, originally worn at their wedding a mere 94 years earlier.  Given LSH went utterly demented 25 years earlier Tina will not hold him to his promise; he continues to play Assassin’s Creed: GoodGriefNotAnotherOne on a daily basis whilst swearing at the screen and wearing most of his food on his shirt.

Tina will be missed by her parents, identical twin sister, older brother, nieces and nephews, her godchildren (referred to always as her odd-children as she was an atheist who believed in humanity), the rest of her family, and her many friends many of whom she has known since they entered the world, all of whom outlive her.  She is hopeful that her own activism and humour has been in some way influential on her loved ones.  Tina believes she is lucky in that she is the first family member to go so doesn’t have to do all that grieving herself, that’s way too much emotional labour.

Tina was a prolific writer in her lifetime.  Her blog is one of the longest to be in existence on the internet, and ever the technophobe she was always one of the last to update her online presence to the most effective way to communicate.  She may have been a prolific writer but she was not prolifically read.

Tina’s blog had always been more of a way of marshalling her own thoughts and a way challenging herself to ensure her own argument stood up in the face of onslaught, in her view.  One of her proudest moments is when a reader contacted her to say her blog had been instrumental in helping the reader successfully challenge the sexist and racist opinions expressed by the reader’s parents.  Tina had changed minds.  Well, mind.  One at a time will work.

Tina wrote a novel called The London Fairy, an urban fantasy with a feminist twist, with which she was pleased but which she was convinced would never set the literary world alight.  It was published and became a massive success winning both the Nobel Prize for Literature and for Chemistry surprising no-one more than her, except the scientists who thought chemistry awards should actually be awarded for Chemistry stuff.  There was talk of bribery but nothing was ever proven, and the removal of the entire voting committee shortly after the awards were made is entirely coincidental.  Sadly it had taken her so long to write her novel she did not have time for a sequel.

Tina also wrote poems, some of which were deemed ‘good’ by those who loved her and were therefore in no way biased about the matter.

Tina did not have children, and the children she did not have are very grateful.

Representation Matters: It Will Save Lives

maternal rates of death by racial identity

Take your time to breathe in those statistics.  A black British mother is statistically more than twice as likely to die in childbirth or shortly after than the nearest racially identified group.  That terrifies me, and I am not within the racial group most at risk, I’m three below.  I also have no children nor do I intend to, which puts me at no risk.

Just as in any other social system, healthcare is imbued with racial disparity; in representation of medical staff, hierarchy and management, and in treatment of patients.  The difference in this case is that it endangers lives and as seen above, leads to death of those already discriminated against in so many other ways.

There are many reasons for the above statistic, not least is the fact there are medical conditions which are statistically more likely to present in particular subgroups; for example, those of African, Caribbean, Middle Eastern, Eastern Mediterranean and Asian heritage are more likely to suffer with sickle cell anaemia.  In the UK, patients are almost always of African or Caribbean heritage.

However, that is a statistical diagnostic prevalence, and not what I am talking about.  I am talking about the different ways in which racial bias in treatment can lead to undiagnosed illness and in the most extreme cases death of patients.  There is a gender aspect to this also, in the way women are mistrusted with regard to information about and complaints regarding their health and their treatment.  This is true both in mental and physical health.

A study published in 2008 found that children of Black or Hispanic/Latino heritage are more likely to be diagnosed with behavioural psychological conditions, whereas those of white heritage are more likely to be diagnosed with depression or substance abuse issues. Those of black heritage are also far more likely to be hospitalised as a result of those diagnoses.  The study concluded in part by stating:

“Findings from our analyses show that race/ethnicity is associated with specific diagnostic and disposition decisions in this PES, suggesting that race may affect diagnosis and disposition decision-making in pediatric PES.”

This correlated with the results of an early study of adults delineated on racial identity lines.

Other studies have found differences in diagnosis of and treatment for prostate cancer for those of different racial backgrounds with those of Black heritage being diagnosed at a far later stage than White patients.  Further studies have shown that pain management and treatment of chronic pain is different according to racial group, with Black people more likely to be seen negatively and either mistreated or not treated at all, or to be viewed with suspicion, i.e. the expectation of addiction issues and of the patient trying to get pain medication for this reason rather than for pain.

Implicit bias in healthcare professionals is not a new concept but it is still not being addressed and it is killing people.

Representation of those of different racial backgrounds is one way of addressing the matter, but that does not fully address implicit bias as we are ALL susceptible to this indoctrination no matter what racial identity we are privileged or unprivileged to present.  This is why women support sexism and misogyny, why Black people can uphold and perpetuate racial discrimination, why disabled people can exhibit discriminatory attitudes towards other disabled people, and so on.

However, representation is a massive step towards changing attitudes.  It starts with education at the youngest level, and requires a fully integrated policy of change.  I believe we need over-representation at first, with affirmative action to remove any implicit bias in the initial stages of study and employment and create the visual representation of those in deemed minority groups in all levels of healthcare work.  We need a deliberate policy of equality education at all stages of medical teachings, with emphasis on implicit bias and the dangers this poses to treatment and this means representation in the minority groups in teaching positions as well.  We also need an effective and proactive complaints system in place which supports those who are discriminated against.

I have made a complaint against a GP for his conduct towards me, and specifically for making racist comments whilst I was discussing a form of treatment.  He seemed to expect my implicit support as I am a white person.  The result of my complaint was that I was taken off his register and will never have to speak with him again, and he was given specific training with regard to his attitudes.  He still treats, he still sees patients.  I live in a borough which is very racially integrated (According to the 2011 census, of a population of 275,885, 53% identify as white and 47% identify as BAME).  I have no idea if he still holds racist views, or how he treats his patients.  The complaint went no further.  All I can hope is that he learned not to racially stereotype at all.

racism-apathy feesI am pleased to note my local healthcare trust has completed a study in this area and seeks to implement the findings.   This is a great step, and should be built upon; and I await the further study citing how effective such actions have been.

People are dying NOW.  It is up to all of us to fight for equality and if you are white-identifying and are not doing so, you are part of the problem.  It should not be in your name, either.

What’s In a (Spoken) Word?

I recently had the opportunity to hear the voice of a woman I respect, admire and hold a lot of affection for, for the first time.  I knew a little of her background and the possible influences on her accent that may have arisen in her lifetime, yet still I was surprised by her voice.  Why was that?  Why did I hold preconceptions and what was it about her particular voice that surprised me?  Accents are myriad as a step outside into any street will tell you; even in a village where no-one has moved in or out for about 200 years will hold people whose accents may vary, even slightly*.

tongue with world on it

My initial reaction was to question myself about implicit bias and presumption based on racial identity; mine and hers.  I think it is vital we hold such questions at the forefront of our analyses of social interactions; I have a lot of privilege in the eyes of society and hope to practice the self-questioning that I preach at all times (of course I fail occasionally, we all do and will, but that just means we keep trying).

Then I realised what it was with this particular accent.  To me, there were notes in her voice which reminded me, of all things, of the TV show “Murder She Wrote” and of the north New York/Cabot Cove accent I had recently heard being voiced by Richie Cunningham’s Dad, that chap from Happy Days, Tom Bosley.  The show is currently on endless repeat on one of the satellite channels in the UK.  To me, Tom Bosley was using a fictional accent as I’d heard him in Happy Days when he didn’t sound like that.  I am from the UK and my accent is Received Pronunciation with a serving of west country (according to m’beloved Sooterkin®), so I had assumed the accents I heard on the TV were fictional and not representative of real people.  I assumed all the accents this actor used were fictional!  As a result, I thought my friend’s accent was fictional until I heard it in real life, and it surprised me!

That got my little brain whirring.  The “little grey cells”, as Hercule Poirot in the guise of David Suchet (or should that be the other way round?) would say, in what (I now have no idea if it is) a Belgian accent.  How much influence does mass visual and auditory representation have on how we perceive and predict about others if we deem fiction to always be fiction?  If the accent we hear in a play is entirely alien to our ears, how can we know whether it is real or not?  If the accent is really bad, and I have heard some shockers (Dick Van Dyke, I’m looking at you, but affectionately because you are adorable), not only does it destroy the suspension of disbelief in the fiction I am watching/listening to but also makes me believe that such an accent cannot possibly exist in real life.  Rather than presumption of existence of such voices, I have a presumption of non-existence of such voices.

I have trained myself and continue to practice awareness to not to think of accents by racial stereotyping nor by gender inference, nor to make presumptions about voices which are marred by a disability of some sort.  I have not though of the bias that may exist in me as to whether an accent is a fiction or a reality.

This is important, because people are still very much judged on the sound of their voice.  In the UK, class is assumed and presumed quite frequently based on accent; if your accent doesn’t match your perceived class there is an inherent belief that in some way you are not truthful.

Those who identify as or identified as BAME will have their racial/ethnic identity questioned if their accent does not fit the stereotype of how they should sound, especially if they are second, third or more generation immigrants into the population in which they reside.  A white person will not be questioned unless their accent is very much identified with a BAME culture or racial identity.

Accents hold a lot of power in our world, subliminal influences on our attitudes towards and assumptions about those around us.  We are all constantly learning about ourselves and the world we inhabit, and until now I had not realised that even the basic belief in the veracity of an accent I may hold is influencing me, and that is something I will take forward when I question myself and address my own privileges.

Check your privilege bingo

By the way, the following may be the worst accent I have ever heard on a television show, and I’m apparently not the only one who thought this.  Oh Castle, how could you? https://www.youtube.com/watch?v=Ei1DnFdJrww

*not even remotely citable by any source, but it would be an interesting experience to find out the truth of it, don’t you think?

People’s Vote or a General Election

Only 15 days into the new year (as at the date of writing) and already 2019 looks to be shaping up to be quite the roller coaster.  It was never going to be an easy year, the Year of Brexit, but the government’s defeat yesterday in the largest loss suffered by UK government in over 100 years has thrown even more confusion over the whole situation.

I’m exhausted.  Ever since the electorate who turned up to the polls vote by 52/48 to leave the European Union, there has been constant argument about what deal to make, whether a ‘No Deal’ is feasible, whether the vote should be allowed to stand when it was such a narrow margin and more people didn’t vote than took part, and now whether to 2019 largest uk defeat brexithave a ‘People’s Vote’, a general election (or, maybe, both) or just to push on through with a No Deal and basically cross our fingers and hope for the best.

In my opinion the vote on whether to leave the EU was fundamentally flawed when both sides of the argument accepted it would be a ‘yes/no’ vote.  On the ‘Yes’ side there was no information as to what any likely deal might be and the electorate were comprehensively lied to by the Brexit campaign*.  On the ‘No’ side, we were led by Labour Leader Jeremy Corbyn who was already widely known to be a Eurosceptic, wanting to leave the EU for very different reasons to the ‘no’ campaign as the EU is very much a capitalist organisation and JC wants a more socialist cooperative EU, and as a result the campaign was not seen as enlivened or engaging**.

So now what?  There is still poverty increasing exponentially, death on the streets as a result of violence or apathy including right opposite our seat of government, increase in use of food banks, disabled people being forced into situations where their health is severely compromised by the dire welfare/social security system and suicide seems the only option – there is so much happening in this country that we forget because Brexit takes up all our time, media and patience.

We need a People’s Vote and this time it needs to be an informed one and the campaigns led by people who believe in the result for which they are campaigning.  May was a Remainer leading Brexit, Corbyn was a Leaver leading Bremain.  It was never going to work.  I like Jeremy Corbyn and a large amount of what he stands for, but on this we disagree.

If we do have a people’s vote it must be truly informed.  We cannot have a ‘Yes/No’ vote.  We need to have options, and we need to know exactly what the deal is that we would be voting for if we voted out.  We cannot have a vote without it being informed, as we are consenting to an action being taken by our government which will have long-term repercussions beyond our and our children’s lives.

We don’t need a General Election, not yet.  The country is not ready for that, and it won’t solve the problem as it will be an election based on the EU issue.  The country and we the people deserve and need so much more than that.  We are living in a situation where membership of the EU is the topic that would override all other considerations.  Our people deserve more than being an afterthought to a trade deal.

peoples vote

I will be watching with interest and more than a little trepidation.  The next few days and weeks will be a rough ride.  But then again, I think this country has got used to life being a rough ride now.  We need a people’s vote.  Then, after this has all settled down a bit, THEN we need a general election.  But we don’t need Theresa May, whatever.

So, politics, bring it on. Again!

 

* https://www.newstatesman.com/politics/uk/2016/06/how-brexit-campaign-lied-us-and-got-away-it
* https://www.theguardian.com/politics/2018/jun/23/brexit-demonstrators-london-we-were-lied-to
** https://www.theguardian.com/politics/2016/jul/05/how-remain-failed-inside-story-doomed-campaign
** https://www.forbes.com/sites/andrewcave/2016/06/27/how-europe-was-lost-five-ways-the-remain-campaign-failed-in-britains-european-union-referendum/#26058b5b19db

A Shattered Dream

BSLIt has been a long-cherished dream of mine that I would learn and become able to communicate in British Sign Language (BSL).

We all have the potential to lose our hearing to a degree and it is very likely we will as we get older, so I thought it would be a useful tool in my personal and work life.  I passed my BSL 101 exam without too much hardship, as I was studying with my Sooterkin™ and we could practice together.  It looked quite positive, and as a person who ‘collects’ exams, I need a measure by which I can assess my progress which is external.  Exams provide that measure, and as applied to myself I have totally bought into the ‘piece of paper proves I succeeded’.  Only applied to myself of course, I do not apply that measure to anyone else.

However, I have now attempted BSL102 twice; the first time I had to leave the term early due to an inability to find the balance between health and life, and this time I was taken aside by the tutor and gently and kindly told that I simply wasn’t to a level where I would pass the exam.  My forms were too untidy, and my grasp of grammar was not good enough.  I can hold general basic conversations but I cannot pass the exams.

I have failed, twice, for many reasons, not least of which I had no-one to practice with and so the one hour a week I was with others also learning was not enough.  Practicing any language alone is difficult, and I have always been ‘no good’ at foreign languages (my words).  BSL may be in English, but the order of words is distinctly Germanic, and I can learn and ‘speak’ but my receptive skills were bad.  This is the same for all my attempts at learning foreign languages.

I so desperately want to be able to speak another language, any language.  I don’t want to be that English person in a foreign land, desperately trying to be understood by speaking English very loudly in a staccato voice, twisting my own language in some ridiculous attempt to be understood.  I don’t want to have to exclude anyone who cannot hear properly or at all, or be excluded myself, from any social or other type of group in which there are people who are hard of hearing.

I tried, I really did.  I sought out Deaf Clubs, joined Whats App to join in the class group, asked if people were interested in meeting up outside of class, practiced at work, adjusted the time of the class so I could attend straight from work instead of having to go home then out again and thereby reducing the spoons used, pre-dosed on painkillers, went early to practice-chat to the class in the pub before we went to the lesson, I even missed out on the 20th anniversary party of my volunteer association Rushey Green Timebank (https://www.rgtb.org.uk/) to attend the extra lesson I paid for to prepare for the exam.  All to no avail.

Quite simply, I am just not good enough to pass the exam.  I can hold a conversation at a basic level, count up to one million, describe people and give and take directions.  I just cannot pass the exam, and I feel like a failure.  I am not a failure though.

I have learned more than simply very basic BSL.  I have learned that I don’t need a piece of paper to ‘prove’ that I am worthy or have value.  It’s taken me a very long time to learn that lesson and apply it to myself.  Why is it that we can learn and understand such ideas and apply them with love to other people, but not to ourselves?

phoenix rising

Phoenix Rising by ~spawntempest on deviantART

I failed, but at least I tried to the absolute best of my ability.  I’ll get over the loss of a dream.  I’ll concentrate on new dreams; I’ll bake; I’ll write; I’ll keep going.  I just won’t be having long conversations in sign language.  So I’m flipping the script.  I didn’t fail, I succeeded in learning something about myself, and isn’t that the best any of us can really hope for, anyway?

So like this picture, I shall wallow for a while but then, like the phoenix, I shall rise from the ashes of that dream to fly towards another.

Any excuse for a picture of a phoenix, eh?!

 

Un-Reality TV: Representation Matters

When I was 15 years old I decided to do a talk on my condition of Epilepsy for my English Language GCSE presentation to my class; I had been diagnosed with the condition just as I turned 12.  I rehearsed the talk in front of my English Teacher and had a seizure midway through.  I was then prevented from actually giving my presentation and given an ‘A’ grade.  As a result neither my experiences nor the information I could impart were ever given.

At the time I felt it vitally important this information be given to my peers because not once in my entire school life was it ever mentioned, discussed or alluded to.  I felt like a grubby secret, like there was something ‘wrong’ with me and I was being judged and found wanting.  I never spoke of how I felt because I did not feel there was anyone I could speak to.  I had been effectively silenced to the point I could not tell my family.

I had a seizure during a PE (Phys. Ed.) lesson with my entire year of girls at around age 14.  My type of seizure was known as ‘grand mal’ at that time (before the internet and the invention of the wheel) and involved full unconsciousness, uncontrollable shaking and often drooling.  I was lucky in that I never lost control of my bladder, but this can happen.  I found it utterly humiliating and traumatising, and as a result squished my emotions about it very far down inside me.

Everyone knew about my condition but no-one said anything, and I did not know anyone who had seizures of any type.  The only time I saw it on TV was in a 1985 episode of US sitcom Diff’rent Strokes when Arnold and Sam saw a street performer they befriended have a seizure of the same type as mine and were making horrible jokes about it.  It was resolved when their housekeeper Pearl shared her experiences of living with the condition and they developed empathy for her and by extension, others.  I cried for a long time after that episode.  It made me feel horrible and scared of what might be said behind my back.  It did not help me at all.  No-one spoke about my condition so how could people be stopped from making cruel jokes if they were?  I did not know if they were or weren’t.  The silence made me assume they were.

Recently, the BBC TV show Strictly Come Dancing showcased the Candoco dance troupe which is made up of able- and non-able-bodied dancers, performing Life on Mars with the Strictly professionals.  The backstage piece on sister show It Takes Two explained beautifully how the fact there were non-able-bodied dancers in the group had led to creation of new interesting moves and a fuller, more varied performance.  The variety of body types led to an improved choreography with greater context and content.

Yet still there is very little in real life interaction between able-bodied and disabled people, and the term ‘disabled’ is problematic in itself.  We are not disabled in ourselves, we are disabled by the lack of accessibility within social settings and in our homes, schools, colleges, restaurants, cafes etc.  This is short-sighted as every single one of us could become temporarily or permanently disabled at any time.  It is not too much to ask that accessibility should be at the forefront of any new building or business, for example.  In the long-term, so much more money would be saved and communities would not be broken up when people’s bodies or minds never or no longer fit into the boxes allotted them.

Integration into schools is a wonderful idea, but it is not practical for many of the buildings in which schools are housed, and without education on the various conditions that students may have, there will be bullying and exclusion.  Schools are overburdened with tasks at the moment and it is unlikely they will be in a position to educate and inform in the near future.

Furthermore, “disability” is used to describe conditions, whereas it is symptoms of conditions which cause problems.  A myriad of conditions may have similar symptoms, and people with the same diagnosis will have different presentations of their conditions in their lives.

So, what to do?  I have a few ideas:

  • Stop calling every person who appears on TV who does not match the two-arms/two-legs able-bodied image of ‘normality’ inspirational simply because they can do something to any standard, let alone a high one. Lauren Steadman, for one example, is a Strictly Come Dancing contestant who has only one arm, with the other ending at her elbow.  She is inspirational but not because she is disabled, because she is a fantastic athlete who has become a gifted and beautiful dancer.
  • Assume that no-one is normal. There is no normal, and if we took averages of eye, hair colour etc. of the entire country and worked out what the average person would be like, no-one would fit that average.
  • Don’t be scared of someone whose body presents differently to yours. It’s a shell, the person is on the inside.
  • Don’t talk over, around or ignore a person with disabilities. I know of people in wheelchairs who have been treated as furniture, simply moved out of the way of a shelf in a supermarket for example, without being asked if they would mind moving out of the way or being allowed the agency to move themselves.  Wheelchair users are not shopping trolleys!
  • Realise that the reason representation may not happen in real life is because real life is not adapted to bodies or minds which do not fit the idealised norm.
  • Understand that representation matters, and be active in encouraging it. Notice what is, and more importantly isn’t, around you. If you are involved in an organisation which is offered some sort of training, education or method of understanding a disabling condition, do all you can to facilitate it!

These are just a few ideas; I’ve recently become my local Labour Party ward’s Disability Officer to try and ensure disability is at the forefront of policy and that constituents with disabilities feel represented and able to be a part of the Party.  I am making the post fit my abilities and timetable.  I am more than capable, I just need to adjust a few matters to make it fit me.  It’s what anyone in any job will do, and the fact I have disabilities just means those are factors I must take into account, in the same way you may take into account the order in which you prefer to do tasks and prioritise accordingly.

No More SpoonsDisabled does not mean unable, incapable, or not able.  It means adjustment may be required to be able.

We all have different levels of ability whether considered a diagnosable condition or not.  Representation matters in real life, and if you don’t see representation around you, start questioning why.  It’s everyone’s responsibility, and that includes you.

We Are No Better: Racism in the UK

There is a tendency in the UK for white commentators on racism to look to the United States and think “thank goodness we aren’t that bad”; a self-congratulatory smugness which I too have been guilty of.  I was wrong and was reminded of my wrongness whilst watching the recent documentary series “Black Hollywood: They’ve Gotta Have Us”; if you’ve not seen it, do so before it disappears.

We white people MUST stop thinking and acting in this way.  It is dangerous, pervasive and allows for the continuation and perpetuation of systemic racism, and of the micro-aggressions in everyday life which are suffered by those not identified as white.  We have a habit of looking to the United States and seeing a history of slavery, shareholding akin to feudal serfdom, oppression through Jim Crow laws, the criminalisation of miscegenation, segregation and even now widespread voter suppression of non-white voters in States such as Georgia, Florida and Arizona, and the disenfranchisement of Native Americans in North Dakota, and congratulating ourselves that we are better than they are.  We like to think that it could not, did not, and does not happen in the United Kingdom.  We are not better.

Our institutions and our people benefited from slavery.  Our northern mills were run on cotton from slave plantations.  Our sweet tooth was destroyed by sugar cane harvested by slavery.  We were a part of the slave triangle; we transported slaves to the Americas, we transported the goods taken from the work of enslaved people, and we paid money to those kidnapping and transporting African people to the plantations.  Our economy boomed on the backs of those tortured and treated as cattle, dehumanised and destroyed for the sake of white prosperity.  There were 46,000 slave owners in Britain throughout the period in which slavery was legal.

We may have ended slavery in 1838, but we moved to an Empire which still oppressed and oppresses people of colour.  When independence was achieved by myriad colonies over the next 150 years, we moved to a Commonwealth through which to perpetuate the oppressive racist society we had come to rely upon.

no blacks no dogs no irish

A common sign in private rental accommodation before the Race Relations Act 1965 banned this.

Those who came to what was known as the ‘Motherland’ from the West Indies between 1948 and 1971, known now as the Windrush Generation, arriving by our invitation to take up the jobs we already resident in the UK did not want to do, were met on arrival with overt racism in the forms of signs stating “no blacks, no dogs, no Irish” when seeking accommodation and outright racism in political campaigns for elections, and are now met with a denial of their right to be in this country by

Tory campaign poster

Campaign poster for the Tory party from the 1960s

our current government.

We white people are seeing a renaissance of racist expression at the moment; there are more overt acts of racism being recognised and publicised than ever before.  Note however, that this is being recognised and publicised by the media, which is in itself a perpetuator of systemic racism.  What white people are seeing is not new.  What white people are seeing is the lived experience of people of colour, and it is still denied by so many.

Testimonies are denied by white people.  We demand proof, as if it is possible to give proof of words said, micro-aggressions given, looks sent and attitudes expressed.  We demand a level of verification akin to a criminal court or ‘it didn’t happen’.  This in itself perpetuates the very racism being testified about.  It is a Catch 22.  We white people do not suffer racism, we are privileged by it, and we therefore either do not see it or choose not to see it.

Overt racism is easier to fight because it is obvious, in our faces and white people can separate ourselves from it.  Covert racism is far harder to fight, because we must face the fact that we benefit from it and may (probably do) enact micro-racisms ourselves.  I used to say I was ‘colour-blind’ until I was awoken to the fact this is a racist thought process denying the experiences of those who do not have the privilege of being white and never experiencing racism.

If you are struggling for what you can do, try these for a start:

  • Acknowledge your white privilege and open your eyes to see how it is enacted every day. This will be hard at first, but once you start, it will, sadly, get easier.
  • If a colleague, friend or family member makes a racist joke – don’t let it slide. Ask them what it is they find funny about it, or pretend you don’t understand it and get them to explain the meaning.  Then simply say you don’t find racism funny.  No-one should get a pass on being racist.
  • If you witness a racist incident, don’t be a passive onlooker. Support the person being abused and confront the racist person.  Do it on your own volition, not on behalf of the person being abused.  Redirect the ire; be the change you want to see.
  • Sign petitions, go on marches, be public and loud in your opposition to racism at every opportunity. You may get tired of it, but people suffering racist oppression don’t get a day off so nor should we.
  • If someone tells you of a racist incident they suffered, don’t demand proof, offer empathy.
  • Speak openly with your children about oppression and make an effort to open them up to the history and achievements of people of colour. Watch movies, TV programmes and books with people of colour as protagonists.  Representation matters to everyone.
  • Don’t expect a person of colour to educate you. Do it yourself.  Google, go to a library, ask for recommendations from friends if you feel they will be receptive.
  • If someone calls you out on something you have said, stop and listen and take time to think about what they are saying. White privilege blinds us; don’t get upset by someone who is trying to help you to see.  If it is in an angry tone, just put yourself in the shoes of the person calling out – how many racist comments or incidents would it take to be aimed at you before you got angry at every one? They are doing you a favour in trying to help you to see, don’t tone police, just listen.
  • You might suffer from bigotry for other reasons, such as sexuality, ability or gender. That doesn’t mean you can’t benefit from racism.  Privileges and oppressions intersect.  Don’t be the person who says “what white privilege? I’m *insert intersecting identity here*, I’m not privileged”.  It’s not a competition, it’s not an either/or situation.
  • Don’t claim to be ‘colour-blind’ or ‘not to see race’; that simply denies and silences the experiences of people of colour and denies your white privilege which you benefit from without having a choice in the matter. It’s offensive, so don’t do it.  That’s something I was called out on long ago, and I am very grateful for it.

confronting privilege

Confronting white privilege is an ongoing process which we white people must do every single day, no matter how ‘woke’ we may think we are.  If we don’t, we are the worst part of the problem.

GUEST BLOG-Diane Goldie Artwear

Well, it’s a bit of a guest blog, in that I wrote it for my friend and creative genius Diane Goldie.  I reproduce my section of the article here, with permission, and strongly recommend you click through to Diane’s site not only to see and hopefully either purchase or commission some of her wonderful innerwear (as I am now calling it), but also to read the full post which is longer than my mere wordage below! I’m leaving the photos of me wearing said Diane Goldie productions, so you’ll have to click to see that!

https://www.dianegoldieartist.com/blog/guest-blog-number-4-tina-price-johnson

Wearing Myself

I first ordered a bespoke Diane Goldie artwork dress in 2014, in anticipation of the first handfasting celebration that I had been asked to participate in.  I wanted something unique, a dress that reflected me on a very basic and spiritual level, which also made me feel comfortable and look fabulous.  No pressure on Diane at all then!

So many images, so many words, so much that needed streamlining to fit on a dress; I knew the style I wanted, I knew the base colour I wanted, but what else?  What images could I select that would make me feel I was wearing my soul on the outside?

Diane is a fabulous collaborator; she intuits what you want, and the clothing is a part of you, not a covering for your skin.  My dress is an extra limb, a constantly firing neuron, an unspoken shout of who I am.

So of course, one is not enough and I have already purchased another off-the-rack sale item which again seemed to have been made for me.  Who knows, maybe it was?  It just took the sale for the dress and myself to find each other.

To wear a Diane Goldie artwork is not just to wear an item of clothing.  It is wearing oneself out, loud, proud and honest. It is a pride in myself that doesn’t put me above others, but above my own insecurities and my worst fears.  It is a shield and a sword that cuts through the bullshit to who I am and to who those who see it are.  I can trust the reactions of those who see what I am wearing.

If they love the clothing as much as I do, then I know I may have found a new friend.

I have ideas for my next commissioned piece.  That’s the (not a) problem with Diane Goldie clothing; like tattoos, you will find yourself always wanting more!